Living with CML

Updated 10 Aug 2017

There’s a lot of support you – and those close to you – might need if you’ve been diagnosed with chronic myeloid leukaemia (CML). As well as medical information about your condition, other information will be important – such as how to tell people, how to look after yourself emotionally and physically and practical advice about things like finances. 

> You'll find information below and in our Living with blood cancer section

Looking after yourself physically

Updated 26 Jul 2017

Changes in your condition

During and after your treatment it’s important to contact your healthcare team at the hospital straight away if you notice any new symptoms – don’t wait for your next check up. Symptoms to watch out for are bone pain and other signs of progressive disease, as well as potential side effects from your treatment.

Keeping active

Do exercise in moderation, but if you’re suffering from a lot of pain – like particularly bad cramps and stiffness – after exercise then make sure you talk to your doctor about this.

You might feel tired a lot (fatigue). This might be caused by your treatment and isn’t the same as normal tiredness, which improves with rest and sleep.

While even the idea of doing something can be tiring if you’ve got fatigue, try to keep as active as you can because evidence shows that this could help to make your symptoms less severe.

Although staying active may help, there’s no evidence that any particular exercise programme can improve your condition or how you respond to treatment.

Diet

There’s no evidence that any special diet will improve your condition or how you respond to treatment. However, you’re likely to feel fitter and healthier if you follow general advice on good diet from your hospital or GP.

If you’re taking TKI it’s important to:

  • keep well hydrated
  • only take 50% of the recommended maximum dose of paracetamol
  • increase your intake of calcium, magnesium and potassium to help with cramps caused by TKI (for calcium eat dairy products or take calcium supplements – potassium is found in orange juice, plain chocolate and bananas
  • not eat or drink grapefruit, grapefruit juice, pomegranate, Seville orange or any Seville orange juice – make sure if you’re taking orange juice for potassium it’s not made from Seville oranges as chemicals in these fruits interfere with the action of the TKI.

You can drink a small amount of alcohol with TKI, in a similar quantity to if you were planning on driving.

Complementary and alternative therapies

Updated 31 Jul 2017

It's important that you know the difference between alternative therapies, which are offered in place of medical treatment, and complementary therapies, which are used alongside standard treatment.

Extensive research has shown no evidence that any alternative therapy has any benefit in treating of any form of cancer. We don’t recommend that you use any alternative therapy in place of proven medical care. Always let your healthcare team know about any complementary treatments you’re using or thinking of using.

They may advise you to avoid certain therapies because of specific risks or the treatments you’re receiving. In other cases, they may say a therapy is OK as long as you take specific precautions.

Practical support: blood cancer

Updated 31 Jul 2017

Your work, education and domestic arrangements

If you work or are studying you might want to contact your employer or college, or ask someone to do it for you. Most will do everything they can to help.

You might need to make a short-term arrangement with your employer or college at the time when you’re diagnosed so you can have time off when you need to be at the hospital. If you have to stay in hospital for your treatment, or you’re not well enough to go to work or college, you’ll probably need to make a more formal agreement.

You might need to bring in written proof of your diagnosis from your healthcare team, which makes clear the effect cancer could have on your ability to work or study.

You might want to consider taking time out from work during your treatment. Advice you’re given on this might vary but it’s entirely your decision, so consider discussing it with your healthcare team and thinking about the demands of the specific work you do. If you’re studying at college or university, you might similarly want to think about whether you want to continue with your course or delay it for a short time.

If you’re a parent or a carer, you might need support during your treatment. You might have unplanned stays in hospital because of infection for example – it’s helpful to have plans in place just in case.

Cancer and the law

People with cancer, or any other serious disease, are covered by a law called the Equality Act – for the purposes of the act, cancer is considered a disability. This means that employers and places of study are required by law to make reasonable adjustments for ‘people with disabilities’ and can’t discriminate against you.

An example of a reasonable adjustment would be if you need time off to go to hospital for treatment.

Getting to hospital

If you’re being treated as an outpatient (not staying in overnight) you might need to go to the hospital a lot. If you find this hard because of transport or any other reason, you can ask your consultant if you can have any of your treatment nearer to where you live. It might not always be possible but sometimes it is – it depends on the healthcare facilities close to your home and the type of treatment you’re having.

Financial support

Your finances might be the last thing on your mind if you’ve just been diagnosed with cancer, but there are lots of places you can get help and advice.

Your hospital will normally have medical social workers or welfare rights (benefits) advisors who can advise on which benefits you might be able to receive. These might be especially useful if you’re on a low income or are unemployed. If you’re worried you can ask to speak with an advisor as soon as possible after your diagnosis.

If you normally pay for your prescriptions but are being treated for cancer (including any side effects) you can apply for a medical exemption certificate for any drugs you need for these reasons. Application forms are available from your GP surgery or hospital clinic.

Where to get help and support

Updated 26 Jul 2017

Many people affected by blood cancer find it useful to call on the expert information, advice and support offered by a variety of organisations, including ourselves. Here are some we recommend.

Bloodwise

We offer patient information online and in free printed booklets, and have an online community you may like to join.

We can help with practical and emotional support and signpost you to other available services.

Macmillan Cancer Support

Offers practical, medical, financial and emotional support.

CancerHelp UK (Cancer Research UK’s patient support service)

Offers information about different conditions, current research and practical support.

Leukaemia Care

Offers patient information, a 24 hour care line and support groups for people affected by leukaemia, lymphoma, myeloma, myelodysplastic syndromes, myeloproliferative neoplasms and aplastic anaemia.

African Caribbean Leukaemia Trust (ACLT)

The ACLT aims to increase the number of black, mixed race and ethnic minority people on the UK Bone Marrow Register by raising awareness and running donor recruitment drives.

Anthony Nolan

Runs the UK’s largest stem cell register, matching donors to patients with leukaemia and other blood related disorders who need a stem cell transplant.

Maggie’s Cancer Caring Centres

Centres across the UK, run by specialist staff who provide information, benefits advice and psychological support.

Marie Curie Cancer Care

Nine hospices throughout the UK and offers end of life support to patients in their own homes, free of charge.

MedicAlert Foundation

Provides an identification system for individuals with hidden medical conditions and allergies, in the form of emblems you wear on your body and necklaces or wrist bands.

CML Support

An online patient support group for CML patients, their families and carers.

Teenage Cancer Trust

Offers a range of information, advice and practical support to younger patients.

Financial advice

 

Citizens Advice Bureau (CAB)

Offers advice on benefits and help with filling out benefits forms.

Department for Work & Pensions (DWP)

Responsible for social security benefits. Provides information and advice about financial support, rights and employment.

Travel insurance

 

Macmillan Cancer Support

Provides information about what to consider when looking for travel insurance, along with recommendations from the Macmillan online community.

Association of British Insurers (ABI)

Provides information about getting travel insurance and contact details for specialist travel companies.

British Insurance Broker’s Association (BIBA)

Offers advice on finding an appropriate BIBA-registered insurance broker.

Looking after yourself emotionally

Being told that you have cancer can be very upsetting and will almost certainly bring many different emotions. Friends and family may be able to offer support, but it may be harder for them to understand the long term emotional impact that you might experience.

Your healthcare team should consider your emotional, as well as physical, needs – this is called a holistic needs assessment. You’ll have one a few times throughout the course of your treatment and beyond, as your emotional needs might change.

It’s important to remember that there is an excellent chance of response with tablet therapy.

Telling others about blood cancer

Updated 26 Jul 2017

Everyone's different, and you might not want to tell many people – or anyone at all – about your condition. It's your choice, and you'll want to think about what works best for you.

Many patients tell us that keeping in touch with loved ones throughout their illness keeps them going. However, some people may find it stressful having to discuss their condition lots of times with family, friends and colleagues. You might find it easier to ask a trusted family member or friend to be your ‘information person’ and ask them to keep people updated on your behalf.

Another idea is setting up a blog or Facebook page, so you or different people can post information on it that everyone can read.

You might not want to tell many people – or anyone at all – about your condition. This is ok too, whatever works for you.

Telling children and teenagers

Talking to children and teenagers about your cancer diagnosis can be difficult. There are lots of organisations that are able to support you and offer you advice about how to explain cancer to children of different ages.

> Macmillan Cancer Support has more information about talking to children and teenagers

Telling your GP

Your team at the hospital will keep your GP informed about your condition and any treatment you’re having. They’ll usually send your GP a letter with this information. As the patient, you’ll often be sent a copy too. These letters can have a lot of medical terms in them which you might not have heard before, or there might be something in it which worries you. If this is the case, let your hospital or GP know – a quick chat with them might help to reassure you.

Cancer and work

Consider telling someone at work about your diagnosis. It can be hard asking for time off at short notice if no one knows about your illness, and your colleagues and human resources department might be able to offer support.

> Find out more about cancer and work from Macmillan Cancer Support

 

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